islandgirls Posted May 20, 2021 Share Posted May 20, 2021 He was supposed to have 4th Triplet infusion on Monday. No go because he is anemic. He has lost about 25 lbs since diagnosis Feb. 1st, and has really been hit hard after his third tx with fatigue, no appetite (not really nausea) and continues to have major sleeping issues. Going to add in here that he started at 230 lbs and ate like a third grader before cancer... steady diet of Mt. Dew, Cheetos, candy bars, etc. so some of the weight loss was his sudden aversion to junk food... The anemia makes perfect sense as a side effect of treatment and his lack of eating, so I was not really upset about not doing the last treatment. Oncologist said he wanted scans to see if there’s progression because of his myriad of symptoms. Right away I knew I should have gone to the appointment... not that he is exaggerating, but by being on here snd seeing all of you guys’ stories and side effects, I would say Boyfriend is doing pretty well. HOWEVER, his daughter went with him to the appointment. Remember she is incredibly NEGATIVE... Today I read his MyChart (am on his HIPAA) and saw oncologist stated if scans come back with progression that the patient “and his daughter who is his power of attorney” are interested in hospice and do not want further medical treatments with no interest in trials. I ABOUT FELL OUT OF MY CHAIR. After I started breathing again, I called Boyfriend. He clarified that by saying he told oncologist he didn’t want to do a trial now until the scans show what is going on. But he is still open to the idea depending what the trial entails. I am pushing hard to get him to Anderson. We are in St. Louis at Siteman. The problem remains to be DAUGHTER who texted me today about something else and said the next step was hospice because “He is getting worse and worse every day.” She is out of her FREAKING mind. Or maybe my Pollyanna glasses need adjusting. I think his current state is 100% chemo/immunotherapy related!!! So I ask you: 1. He just started having excruciating arm pain that is mimicking his previous (still present) leg pain... says it feels like someone is trying to pull his leg/arm off. 2. Upper back shoulder pain. 3. Rib/chest pain He has confirmed osseous lesions in spine, sternum, leg, etc. Obviously still pretty wiped out, but starting to eat a tad better. Last infusion was April 22nd. I once again feel soooooo frustrated, but try to focus on his response when I ask him about further treatment as he seems receptive to it. But Geeze!!! Any input on the pain is most appreciated. I mean maybe I’m underestimating the possibility of rapid progression but his last scan was March 31st and showed partial response. Remember we have NO PET scan yet as oncologist was going to do one two weeks after this canceled treatment. So his first scan was Feb 1st, then no scan before tx started on March 12th. So scan on March 31st could have actually showed a response because who knows how much the stuff grew between diagnosis day and treatment day... It’s hard enough seeing him weak and miserable, but add in the horrid attitude of his daughter (a nurse no less) and I am about to drink a bottle of vodka or beat my head against the wall... Oh, and he started THC. Started 5 mg indica to sleep. Didn’t work. Last night did 10 mg and the arm pain woke him. Tonight trying 15 mg and he’s been sleeping next to me now for 45 minutes... fingers crossed he’s out for the night and big fingers crossed for scans on Saturday!!! Thanks for listening! 💜 Quote Link to comment Share on other sites More sharing options...
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